2025 was a year of momentum for the FTD Disorders Registry, with a 97% increase in new accounts. Learn more about the year’s growth and impact: ftdregistry.org/press/a-year... #endFTD #FTDresearch

This Christmas, we’re thinking of everyone in the FTD community. Thank you for supporting the FTD Disorders Registry and helping advance research. Wishing peace and comfort to all who celebrate.

The FTD Disorders Registry was recently featured at #CTAD2025 in San Diego! Dr. Shana Dodge presented a poster showing how the Registry is helping accelerate clinical trial recruitment. Read more: ftdregistry.org/press/ftd-di...

Each month, the FTD Disorders Registry invites our community to answer one quick question. Add your voice today and see how others responded to last month’s question: ftdregistry.org/quick-questi...

Wishing a warm and meaningful Hanukkah to those who celebrate. May the Festival of Lights bring light and hope. We are grateful for our Registry community. Chag Sameach!

Attending #CTAD2025 this week? Stop by our poster P407 to learn more about the FTD Disorders Registry. #endFTD

On #GivingTuesday, we’re grateful to @theaftd.bsky.social & The Bluefield Project, whose support makes the Registry possible. Please consider supporting these organizations driving progress to #endFTD. AFTD: www.theaftd.org/get-involved... Bluefield Project: www.bluefieldproject.org/donate/

Join us for an inside look at the progress shaping FTD research. On 12/10 at 3 pm, AFTD experts Dr. Penny D. and Dr. Chiadi O. will discuss advancements from 2025 & the momentum driving us toward effective treatments in the years ahead. Sponsored by Passage Bio Register now: https://bit.ly/4rfNmOq

One drop can tell a story. Discover how biosamples are powering FTD research and how you can help: ftdregistry.org/press/what-w... #endFTD

Each month, the FTD Disorders Registry asks one simple question to learn more from our community. Share your answer today, and see how others responded to last month’s question. ftdregistry.org/quick-questi...

Carrie Milliard, MS, CGC, CCRC and Esther Kane, MSN, RN-CDP are back representing the FTD Disorders Registry and @theaftd.bsky.social at #GSA2025. Come visit us at Booth #201.

The FTD Disorders Registry and @theaftd.bsky.social are presenting data on the FTD diagnostic experience and impact on families at the @geronsociety.bsky.social Annual Scientific Meeting this week. If you are attending, please come visit us at Booth #201. #GSA2025

Rev. Jesse Jackson’s hospitalization has brought attention to #PSP, an FTD subtype that affects movement, balance, and eye control. Early symptoms often mimic Parkinson’s. Learn more: www.theaftd.org/what-is-ftd/... PSP research opportunities: ftdregistry.org/find-a-study/

Today we honor the genetic counselors who guide families through FTD genetics with clarity and compassion. Their work directly supports the mission of the FTD Disorders Registry to build a strong, informed, research-ready community.

As we honor Veterans today, we also recognize ongoing efforts to better understand and support Veterans impacted by FTD. Research continues to expand, and your participation and experiences guide that progress.

New FTD studies are now recruiting. See this season’s Fall Research Roundup to learn how you can help move FTD science forward: ftdregistry.org/press/ftd-re... #endFTD #Research #NumbersHavePower

Results from Alector Therapeutics’ Phase 3 trial for Latozinemab (AL001), designed for people with FTD caused by GRN variants, have raised important questions for many. Join us on Nov. 6 for a live discussion about what these results mean and what’s next for FTD research: https://bit.ly/3Lw3Sco

Data were shared at the NEALS Consortium Annual Meeting by Registry Director Carrie Milliard, showing how the Registry helps bridge FTD and ALS research and speed up clinical trial recruitment. ftdregistry.org/press/regist... #FTD #ALS #C9orf72 #ClinicalResearch #NumbersHavePower

What are Registry participants most interested in? Each number represents someone looking for answers and contributing to discovery. Learn more: ftdregistry.org/press/what-t... #endFTD

Alector has announced results from its Phase 3 trial of latozinemab (AL001) for FTD-GRN. While the study did not meet its goals, it offers insight that will guide future FTD research. Thank you to all who participated and continue to advance FTD research. Learn more: ftdregistry.org/press/alecto...

The new Quick Question is live! Each month, the FTD Disorders Registry asks one simple question to learn more from our community. Share your answer today, and see how others responded to last month’s question. ftdregistry.org/quick-questi... #EndFTD

How do you talk to family about the genetic risks of FTD? On 10/20 at 3 pm, AFTD will host a webinar featuring community members Wanda Smith and Ansel Dow, who will share their experiences. Angela Lunde, from Mayo Clinic, will provide practical tools and strategies. Sign up: https://bit.ly/46TyMUh

Living with FTD or caring for someone who does can bring emotional challenges that often go unseen. This #WorldMentalHealthDay, remember: your well-being matters. You are not alone. Find support through @theaftd.bsky.social: theaftd.org Learn more at ftdregistry.org #EndFTD

FTD Disorders Registry Director Carrie Milliard and @theaftd.bsky.social's Amanda Gleixner joined the NEALS Consortium Annual Meeting, raising awareness of FTD and connecting with the ALS community to advance research, collaboration, and hope. #NEALS #NEALS2025 #NEALSMtg

What would make a treatment for FTD truly effective? In our FTD Insights Survey, people shared a wide variety of hopes from easing daily challenges to improving overall quality of life. #endFTD

Registry data helps researchers spot patterns, shape better studies, and move us closer to treatments for FTD. Every participant makes a difference. Read more: ftdregistry.org/press/the-ro... #FTD #EndFTD #FTDResearch

FTD is genetic in about 20% of cases. Yet only 23.3% of people diagnosed and 12.4% of relatives have had genetic testing. Learn why this matters: ftdregistry.org/press/what-r... #endFTD #WorldFTDAwarenessWeek #FTD #Genetics

During World FTD Awareness Week, we recognize the challenges care partners face. The daily demands of FTD can make research participation difficult, yet their voices are essential to progress. Learn more: ftdregistry.org/press/how-ca... #WorldFTDAwarenessWeek #endFTD #FTDResearch #FTDAwareness

FTD impacts more than health. It strains finances. Care partners say the top job effects are retiring early, cutting hours permanently, or cutting them temporarily. Share your experience in this month’s Quick Question: ftdregistry.org/quick-questi... #WorldFTDAwarenessWeek #EndFTD

FTD impacts care partners too with stress, lost income & financial strain. At #AAIC25, the FTD Disorders Registry showed how misdiagnosis & delays deepen that burden: ftdregistry.org/press/regist... This #WorldFTDAwarenessWeek, let’s honor care partners & push for faster diagnoses.

FTD can steal your words, your connection, your voice. Join the FTD Disorders Registry to help researchers find treatments and a cure. www.FTDRegistry.org #endFTD #FTDAwareness #WorldFTDAwarenessWeek #FTDResearch

FTD disorders can make someone seem like a stranger to their loved ones. Registry data show three of the most distressing symptoms are impaired judgment, personality changes, and mood changes. www.ftdregistry.org #WorldFTDAwarenessWeek #EndFTD #FTDAwareness #FTDResearch

World FTD Awareness Week starts with action! See how survey responses from the Registry Research Study become powerful data that drives FTD disorders research. Read more: ftdregistry.org/press/from-s... #endFTD #FTDAwareness #FTDResearch

Memory isn’t usually the first thing to change in FTD. Registry data shows the most common early symptoms are: • Language challenges • Cognitive changes • Mood changes Raising awareness helps speed diagnosis & research. www.FTDregistry.org #EndFTD #FTDAwareness #FTDResearch

World FTD Awareness Week begins today! FTD often starts between ages 45–65, making it the most common dementia under 60. Let’s raise awareness and drive research toward treatments and a cure. #EndFTD #FTDAwareness #USA

The @theaftd.bsky.social Research Roundtable is underway! Dr. Michelle Campbell (FDA) led a session on defining meaningful change, featuring FTD Registry data from Carrie Milliard, MS, CGC, and insights from advocates Julia P. & Dr. Joseph M. #endFTD

New Quick Question is live! Each month, the FTD Disorders Registry asks one simple question to learn more from our community. Share your answer today, and see how others responded to last month’s question. ftdregistry.org/quick-questi... #endFTD

Finding answers to an FTD diagnosis is often a long and difficult road. In our upcoming webinar, The Lived Experience with FTD: The Road to an Diagnosis, you'll hear 3 powerful stories that shed light on this journey. 📅 9/25 at 12 pm 💻 Register here: https://bit.ly/3JLiqUL Sponsored by AviadoBio

Registry Director Carrie Milliard joined real-life superheroes at the Rainwater Charitable Foundation’s Tau Consortium Investigators’ Meeting: scientists, clinicians & advocates pushing toward breakthroughs in tauopathies. Together, we’re stronger. 💜 #endFTD

FTD Disorders Registry Director Carrie Milliard, MS, CGC, CCRC and Nicole Bjorklund, PhD, Director of Research and Grants for @theaftd.bsky.social shared how we are supporting FTD research initiatives at Rainwater Charitable Foundation's 2025 Tau Consortium Investigators Meeting this week. #endFTD

World FTD Awareness Week is coming Sept 21–27, 2025. This year we ask: “What If It’s FTD?” Update your profile, use the toolkit, and share your story to raise #FTDawareness. Learn more: ftdregistry.org/press/get-re... #EndFTD

Amylyx’s ORION trial in PSP has ended after not meeting its goals. While the news is disappointing, every study adds knowledge that guides future research. Read more: ftdregistry.org/press/orion-... #endFTD #FTDresearch

FTD Disorders Registry data was featured in several posters at the Alzheimer’s Association International Conference this year in Toronto. Learn more and view the posters: ftdregistry.org/press/regist... #AAIC2025 #endFTD

Emma Heming Willis was interviewed Tuesday night on “Emma and Bruce Willis: The Unexpected Journey – A Diane Sawyer Special,” sharing her family’s experience of living with FTD. 🔴 Learn more: https://bit.ly/47Ny0sS

Research is the key to #EndFTD. Bruce Willis’s diagnosis raised awareness about FTD disorders impacting thousands of families every day. Progress will come through research. Together, we can find answers. ftdregistry.org/press/the-im...

Anyone with an interest in FTD disorders research can join the Registry! Sign up here: www.ftdregistry.org

Thank you to everyone who answered questions about sleep challenges in last month's Quick Question. This month, we are asking about the types of health insurance coverage. To answer and see last month’s results, visit here: ftdregistry.org/quick-questi... #FTDQuickQuestion #EndFTD

Thank you, #AAIC2025! We loved connecting with researchers, clinicians & advocates at our booth. Your curiosity and commitment to advancing #FTD understanding inspire us. Let’s keep moving toward earlier diagnosis and better care. #FTDRegistry #FTDResearch #EndFTD

Join us for a free webinar on Wednesday, August 13, 2025 to explore the diagnostic journey for frontotemporal degeneration (FTD) and how we can improve detection and referral. Free CME and CEC credits available! Register here: events.zoom.us/ev/AlPqObBF8... #endFTD #neurology

Great connecting with the team from Cure MAPT FTD today! #AAIC2025